Shh-WOO-woo, or, It’s Weird to Look at Your Insides

Started today by getting an echocardiogram at the Hospital adjacent to Dana Farber. This is an ultrasound of the heart, intended to assess heart function. Specifically, they’re interested in how well my heart is pumping blood. This is called (ahem) “ejection fraction,” or EF.

The concern is driven by my Herceptin infusions. In another example of how cancer treatment can negatively affect patient’s lives over the long term, research (here, here, and here, among other studies) has shown that Herceptin, aka trastuzumab, can cause loss of heart function. This isn’t an immediate effect, but given the multi-year use of Herceptin, the cumulative effects can be problematic for some people. As is often the case, however, the research on this isn’t crystal clear. There are many caveats about the conditions under which Herceptin might cause cardiac dysfunction, as well as the reversibility of this problem. The upshot is that it’s standard to do regular echocardiograms to keep an eye on any possible problems.

Back to the ejection fraction. Normal EF is 50-75%. Left Ventricle EF (LVEF) less than 50% is technically considered heart failure. When I had this done on May 8, my LVEF was a strong 72%, and today’s test will be used as a comparison to see if my treatment has negatively affected my heart.

Silver Linings Alert: A very nice difference between today’s echocardiogram and the one done on May 8 is that I no longer have all that abdominal pain. The process requires lying on your left side on a bed while the technician pokes and rolls a small ultrasound transducer that looks like an ink roller over your heart. This is probably no big deal for men (see image above), but for women, I can tell you it’s rather uncomfortable. Those pesky breasts. The tech pokes/rolls the ink roller around the chest, applying a good deal of pressure to try to get a good image of the heart beyond all that useless, dare I say traitorous, breast tissue. Anyway, back in May, it was difficult for me to lie on my back or side for any length of time without pain, which made this relatively simple procedure a little more difficult. Today I was able to lay there for nearly an hour without any problem.

It was fascinating to hear all the different sounds made by different parts of my heart. At one point I noticed a distinct shh-WOO-woo, shh-WOO-woo, shh-WOO-woo sound, though I don’t know where she was with the transducer at that point. It was at this point that I turned my head to the right to get a view of the monitor. And what an amazing view it was! (The soundcloud link below is not my echocardiogram, but you get the point. I was bummed to discover that this person’s heart doesn’t say shh-WOO-woo.)

 

I kept asking the technician questions, and she was happy to try to answer them, but as a non-native English speaker with a very strong accent, it was hard to understand much of what she said.

Image result for heart anatomy
Image: Texas Heart Institute

Still, I gathered that they pay special attention to the left ventricle because this is the real powerhouse of the heart, responsible for most of the pumping. The other heart chambers, she said, are more passive. She poked and rolled and made a big mess of my chest with all the lube they use to allow the pokey ultrasound transducer to “glide” more easily. There was not much gliding involved in this exercise, I can tell you. Then she instructed me to take short breaths – not too much! – to capture the heart filling and pumping. Too big a breath meant that the heart would expand beyond the view of the monitor window, making this a rather precise process. She went on to say that breathing is a very important exercise for good health. I feel like I’ve been inundated with instructions to meditate (and practice breathing) lately. It almost felt like she was a paid protestor to further this pro-breathing agenda.

The 2-D echocardiogram shows an image of the heart (or whatever the target organ or other tissue is) doing its thing, as well as the heartbeat, which is measured by electrodes that are stuck in several places around the chest and abdomen. Periodically she would turn on a feature that would show a color-coded image of blood flow through the various heart chambers, veins, and arteries. The image looks like a heat map, where red colors  mean more blood flow and blue colors mean less. At one point she held the transducer in the upper middle of my abdomen to get a look at the hepatic vein, flowing from liver to heart. The hepatic vein is quite large, and was easily visible to my eye on the monitor, but I was distracted by two pulsating cones (a terrible word to describe this, I’m sure, but that’s what they looked like) to the right, above the liver. It turns out that this was the bottom of my heart. Every time I get one of these windows into my body, I’m amazed at how close together everything is! I’ve heard many times that the heart muscle is about the size of a fist. Well, that’s a bigger fist than mine, apparently, since its lower extremities are far closer to my liver than I would have imagined. We’ve got a lot of stuff crammed in these bodies. No wonder things go wrong so often.

The technician also explained that the heart can experience scarring from breast radiation, in spite of best efforts by radiation oncologists and techs to avoid this. That reminded me of the, again, very precise, practice of breathing and holding my breath that was required during my breast radiation in 2015. They did imaging to figure out exactly how much I would need to inhale and how long I’d need to hold my breath to protect my heart during the radiation zaps. The duration of each radiation treatment was mostly a function of whether I was able to do the inhalation and breath-holding well the first time, or whether it took a few times to get it right. It’s interesting to see this all come full circle now. Oh, and by the way, “radiation therapy frequently augments the cardiotoxic effects of systemic cancer therapy.” Yippee!

No results yet, but Nurse M said this was good news. If there had been bad news, we would have heard today while I was getting the infusion.

Finally, I’ll note that this was treatment number 15 today. Wow. Time has flown. Three more chemo treatments to go, or so we hope. Another CT scan in early September, blood work, and the echocardiogram results will tell the story that informs Dr. M’s decision about whether I need to continue chemotherapy beyond September 7.

Side effects remain about the same. The neuropathy has gotten a little worse, but hasn’t spread beyond my fingertips and toes. The quality of the neuropathy has changed, with my fingertips feeling to me as though they’re calloused, even though they’re not. My nail beds no longer feel sore, but that’s because each of my fingertips feels more deeply numb. As in, deeper within my fingers. It’s hard to explain.

The diarrhea continues, and today DF gave me a prescription for Lomotil, a more powerful anti-diarrheal drug than Imodium. I’ve been using Imodium steadily, with mixed results. Nurse M explained the various strategies that patients deploy with the two drugs: some people decide to skip Imodium entirely and just use the Lomotil; others stagger their use of both. He concluded, “there’s no hard and fast rule for how to do this.”

Without missing a beat, Husband said, “the only rule is that it will come hard or fast.” Baahaahahahahaha!! I think this might be the title for the chapter devoted to pooping in my eventual book. ‘Cause you know there’s going to be a chapter about poop.

Shh-WOO-woo, or, It’s Weird to Look at Your Insides

Cancer Is Inconvenient

That potent bit of wisdom came from my friend, C. She coined this when a very close friend of ours was going through cancer treatment a few years back. I love this line because it cuts to the heart of the matter. I told C that I’m adding this to the running list of titles for my (eventual) book about all this shit.

Today was one of those days when cancer’s inconvenience punched me in the face. Yes, I mixed my metaphors. Sue me.

Husband and I headed up to DF today for a full THP (Taxol, Herceptin, Perjeta) treatment day. This was my 13th (!) chemo treatment, and the start of my 5th cycle. Each “cycle” is 3 weeks for me, starting with a THP day and followed by 2 weeks where I just receive Taxol. This was also the first time we’ve seen Dr. M (instead of his PA) in quite a while, about 9 weeks. The PA is great, but she’s not authorized to make any grand pronouncements about my care, so we were eager to see Dr. M again today. Specifically, we were eager to hear him say that today and the next two weeks would constitute the end of my chemotherapy.

You may recall that when I was rushed into chemo treatment in May, Dr. M told us that he expected me to receive 4-5 cycles of Taxol. We learned sometime thereafter that I would continue to receive the antibody treatments (Perjeta and Herceptin) every three weeks thereafter, forever. I’ve since learned that the antibody-only infusions will be pretty streamlined compared to the chemo treatments: I won’t need bloodwork every time and I won’t meet with my doc/PA every time. This means my time at DF for the antibody infusions should be 1.5-3 hours, with the longer end of the spectrum accounting for the occasional delays that happen when the pharmacy gets backed up. That big time reduction will make this much easier to fit into a reasonable schedule. Right now, even on days when I only receive Taxol, my treatments are usually a minimum of 4 hours at DF, counting bloodwork, wait times, etc.

But the important part of that previous paragraph is that we were expecting a maximum of 5 cycles, or 15 weeks, of chemotherapy.

Yesterday I had a repeat CT scan of my chest, abdomen, and pelvis to see how my liver looks, and how the liver tumors responded to treatment. My numbers from bloodwork have been excellent, steadily declining, and I’ve been pain free since I started chemo.

Bloodwork_8.2.17

All signs pointed to a great response. My APT, AST, and ALT values are all normal and have been since early June. My CEA and CA 27-29 (the tumor markers) are still beyond the normal range, but they’ve decreased by 99% and 96%, respectively, between May 8 and August 2. Pretty darn good. But the scan would give us a critical piece of evidence. Pictures don’t lie. (Unless, perhaps, you ask Donald Trump.)

CT Scan Comparison_8.2.17

The above images show a few things. First, let me orient you. The “top” of the image is the front of my body, while the “bottom” of each image is my back. My liver takes up most of the space in the images. You can see my spine as the sort of Casper-the-ghost-shaped white thing on the left image and the nuclear explosion-looking thing on the right. The white outline below my body is the scanning table.

The left image is from April 26, the right is from August 2. The red circles show liver tumors. The blue circle shows my stomach, which is fine, I just wanted to indicate what that white thing is. You can also see my (uncircled) stomach in the April image.

On April 26, you can see at least 4 liver tumors in this particular “slice” from the CT scan: two very large ones and two medium-sized ones in a single circle on the lower left. They’re actually a little smaller than they appear on this image, because Dr. M circled them with a pen today while showing us this print out.

Here’s the GREAT news: All the tumors have shrunk, and of course they’ve done so in multiple dimensions, so Dr. M wasn’t able to find an image that simultaneously showed the two large tumors and the two medium tumors in the same frame from yesterday’s CT scan. The image on the right shows one of the large tumors and the two medium tumors. It’s clear that both the large tumor and the two smaller ones are significantly smaller. To put this in context, one of the largest tumors I had as of the April 26 was 57 x 52 millimeters, or 5.7 x 5.2 centimeters. That’s 2.25 x 2 inches!!! It’s hard to believe that I had something that big, plus “innumerable” other tumors in my liver at once when all this started. No wonder I was in such pain. Now, that tumor is down to 16 x 18 millimeters, or 1.6 x 1.8 cm. That’s still more than half an inch in both dimensions, but it’s a massive reduction in size.

Here’s the lousy news: the continued presence of these tumors means that I need more chemo (I don’t yet know how many are still present because we didn’t get the final radiology report and my chemobrain forgot to ask this question of Dr. M). More than two more weeks worth of chemo, for sure. Dr. M said it “might be just 2 more cycles” or 5 more weeks of chemo to get rid of these damn things. I couldn’t help but notice the multiple caveats in his statement.

I’ll continue at the current dose of Taxol, unless my neuropathy gets worse, in which case they might decrease the concentration in the 6th cycle. (The neuropathy has continued to spread and get a little worse, though it’s not that bad. I am having more trouble typing, I’m noticing, and occasionally I get weird electric zaps in my left hand, but I’m still managing just fine.)

After completing these two cycles I’ll get another CT scan to check on the state of the tumors. It’s conceivable that they would want to give me more chemo after that if the tumors aren’t gone. At a minimum, though, I’ll get a 1-2 week break from chemo after September 7 to give my body time to recover a little.

In the meantime, Dr. M order another echocardiogram to be sure that my heart is withstanding all of the chemo alright. Taxol, especially, is hard on the ticker, so it’s important to check. For the sake of my readers, I’ll note that I’ve not had any symptoms that would indicate heart trouble.

Also, Dr. M put me back on the steroid pill I was told to stop taking about 6 weeks ago by his PA. He exasperatedly told us that there are two schools of thought within the DF Breast Clinic about continued use of steroids during chemo. One group thinks it’s always best to eliminate steroids ASAP once it’s clear that the patient doesn’t need them to quell any reactions. Another group – and this is clearly the one Dr. M belongs to – prefers to keep using the steroid once/week to ward off fluid retention, or edema. This is a problem that is not uncommon among patients getting Taxol, and it can lead to serious inconveniences that drugs don’t help. Dr. M said he’s had patients who needed 3 months to fit in their shoes again when edema got out of control. Ok, then. Back to the dexamethasone. No problem!

He also observed that I had a little bit of a rash on my face. Again, this is very common, and I’m lucky that this only started for me within the last few days. He prescribed a cream and told me to stop using moisturizer until the rash subsides. Figures. All the docs and nurses have been commenting for weeks on how “great” my skin looks.

Here’s a recent paper summarizing many of the side effects of Taxol, if you’re interested.

Finally, we talked about my chemobrain problems. This is definitely the side effect that is making me most crazy. There are apparently two hypotheses now about which patients will suffer chemobrain most acutely: one hypothesis argues that very “high functioning” people experience chemobrain more intensely and the other argues that people with a high level of anxiety suffer chemobrain more intensely. There’s really not much to be done about this, although Nurse M suggested I try acupuncture and a guided meditation app. (I will!) But Dr. M offered the most important piece of advice on this, I think, which is that I need to take more time to rest my brain when I feel the need.

I’ve been getting a little better about taking this time, but it’s not my nature to rest, so this is a hard change for me. It’s clear, though, that I need to make the time to chill the F out more often. Reclaiming Fridays for myself is a good start, since I let work creep back in over the summer on this “day of rest” I had assigned myself at the start of chemo. But I’ll also try Nurse M’s meditation app for a quick 5-15 minute rest during the day. And sure, I’ll even give acupuncture a try. Nurse M insisted that I do it a few times before giving up. Looks like I have something to schedule for Friday. 🙂

So, there you have it. This is definitely not the news we wanted or were expecting today. I had been counting down the days until I’d be done with chemo, and it looks like I’ll need to count an extra 21 of them now.

Finally, I have to note that it seems my super power is having an extraordinary tolerance for cancer treatment. I made it through 25 (or 32?) blasts of pelvic radiation and an ileostomy in 2011, another 25 blasts of breast radiation in 2015, and now 13 weeks and counting of chemo. The pelvic radiation and ileostomy knocked me on my ass, admittedly, but I made it for the full prescribed treatment in both cases. In spite of the diarrhea and rash and fatigue and hair loss and weird nails and neuropathy and most of all that fucking inconvenient chemobrain I’m experiencing now, I’m doing really well at this point…which is why they feel comfortable giving me 5 more weeks of this shit.

Years ago, my friend P and her brother famously started an ongoing conversation among our group of grad school friends about our respective mediocre super powers. One of P’s mediocre super powers is knowing every lyric to practically every song from the 1980s and 1990s. She has many other serious super powers, by the way, as does nearly everyone I know. But it’s fun to talk about your mediocre super powers. I guess I’d say that one of mine is the ability to smell decomposing organic matter a week before anyone else with normal olfactory abilities.

But now I think it’s fair to say this ability to withstand chemo #likeaboss is more than a mediocre super power. Even though it’s all really inconvenient.

When I told my friend K about this apparent super power today, she cracked up and suggested a sort of chemo super hero doll along these lines, “IV drip and all.” So, I’ll leave you on a humorous note by sharing my ABSOLUTELY HORRIBLE drawing of Chemotherapy Boss. (I originally called her Chemotherapy Girl, but screw that. Let’s empower this lady.) Of course, like any doll, you have to work out the accessory line to make the real money.

xo

 

Cancer Is Inconvenient

Seriously Snarky

Consider that headline a warning.

My friend J took me to chemo last week and discovered that the DF gift shop’s front display was a bunch of useless stuff celebrating beach life. First off, yes, even cancer centers have gift shops. Second, why on Earth are they selling beach life tsotchkes?

Sure, it’s late July. I suppose this is the time when normal gift shops are pushing these items hard, and even starting to mark them down before the seasonal market floats away like a summer breeze.

But it struck both of us as a little off for a cancer center gift shop. So we decided to edit the cute sayings on these signs and beer cozies to make them more subject appropriate.

I offer you the original products and our reworked versions.

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Best weekend ever…Wasn’t admitted

Best weekend ever…No diarrhea!

Or, instead of “good times and tan lines,” how about “Fluorescent lights and IV bags”?


Heaven is a little closer…when you have cancer

If I can’t wear a surgical mask, I’m not going

Life needs less chemotherapy and radiation

Herceptin Sweet Herceptin

And my favorite:


A good day at the cancer center ends with…leaving

Thanks for the giggles, J.

***

In other news, that was treatment #12. Only 3 to go!

My numbers continue to decline, meaning that I’m in the normal range for most categories. The liver tumor markers are still a little bit elevated, but they’ve come down so much that we can only be thrilled by these numbers.

The chemotherapy induced peripheral neuropathy has started to become more consistent on my left thumb and index finger. It’s not bad at this point, and is generally isolated to my fingertips and toes. I have numbness is most of my finger tips at this point, on both hands, and occasional tingly sensations in my fingertips or a sort of electrical zap through my (left) hand. Sometimes the numbness in these fingers makes it a little difficult to do normal things like wash dishes. It’s especially hard to maintain a grip on wet dishes, but I’ve not yet broken anything. This particular side effect can get very painful and debilitating for some people, and it’s often the reason people stop their chemotherapy treatments early. With three weeks to go, I’m hoping I’ll be done with chemo before this gets too bad.

Nurse M told me recently that neuropathy symptoms typically subside fairly soon after chemo treatments stop. Fingers crossed.

Seriously Snarky

Poopy Hell Days and Random Acts of Kindness

Today is one of those days when cancer sucks.

I just had my eleventh chemo treatment this week, which went fine, as I reported yesterday. I am tired at the end of treatment days, but not in a world-weary sort of way, just because I’ve been wrapped up with cancer treatment for a roughly 10-12 hour period, between travel and actual Dana Farber activities. In short, I wasn’t especially tired yesterday, maybe just a little bit more than average after-treatment tired.

I decided last night that I would go to the beach today. It’s been hot and humid the past couple of weeks, and today seemed like the perfect day for me to finally get in some private beach time. I slept in, had breakfast, then packed up my beach bag to include all the things I might want: my journal and a pen, my tunes, a book, a banana smoothie, etc. It takes a while to adequately prep a beach bag, in my experience. I was also stalling a bit to be sure I wouldn’t have any unexpected and unstoppable toilet needs before heading to the beach.

Good thing I waited, because this turned out to be one of those endless diarrhea days. I took my initial two Immodium pills and then a third when poopy hell struck again. The third pill is generally the charm, and puts the kibosh on further explosions. I finally seemed to have gotten through this GI attack, so I bid Husband and Dog adieu and headed to a beach near work, thinking I could have access to a private bathroom there should I need it. (The benefits of living near the ocean!) Halfway there, I realized I needed to get to a bathroom ASAP. I also realized that I was not going to the beach today. So I turned around, came home, and ran to the bathroom just in time to avoid further ruining my day.

This wasn’t the end of the world, of course. I sat out on our lawn in a beach chair for a while, but it’s just not the same. I wanted sand between my toes and a swim in the ocean, dammit.

This is what cancer does. It sneaks up on you and ruins your day. Even if you’re trying to head that bitch off at the pass, it still manages to sneak up on you, stick it’s nasty little hyper-dividing tongue out at you, and laugh at your well laid plans.

On the other hand…

Last week I had one of those run-ins with unimaginable kindness that seem uniquely, or at least disproportionately, associated with life as a cancer patient.

I’ve been feeling very anti-social lately because of chemobrain. I find it hard to hang out with many people at once because my brain gets easily overwhelmed by the activity, or sound, or attention, or some combination thereof. Although I truly enjoy myself when I have one or two visitors, planning for the visits is also a bit overwhelming (even though it requires practically no effort on my part). As a result, I’ve not seen many people outside of work lately.

Going to the grocery store or other similarly anonymous places allows me to be around people without having to interact with them. I find this comforting, which is odd for a typically social person like me. I both miss hanging out with people and lack the desire to do so. It’s a frustrating mix.

Last weekend I went to a store where I can walk around and peruse clothes, shoes, and home goods. I found some clothes to try on and took them to the fitting rooms. I had to laugh at a couple of the shirts I chose. These were both black, long-sleeved shirts that looked very elegant on the hanger. I thought they might make good work clothes or night-out clothes (for when I actually have nights out again). Image result for science fiction women baldBut when I tried them on, the juxtaposition of these edgy, black shirts with my bald head was a little too jarring. I felt like a character straight out of a science fiction epic.

Hello, Captain Zarniff. It’s Ular Jaro, back from the seventh moon of Syra 11.

One of the shirts had a back zipper that I couldn’t manage on my own, so I did what women always do in this situation: I went into the shared fitting room space to seek out another shopper who could zip me up. Without thinking about it, I walked my bald head right out into the breach.

Luckily, there was a woman trying on a dress by the full length mirror, and she was happy to oblige. I complimented her dress and she unzipped me again after I’d had a chance to view myself in the big mirror (horrifying!). She was kind enough not to comment. We then went back to our respective fitting rooms.

A few minutes later, when I’d finished trying things on, I opened my stall door just as she did, and it happened that she was in the stall across from mine. She had on a different dress and asked my opinion. We chatted for a moment about the various pros and cons of each dress. Then, hesitating, she asked if I was in treatment. I said yes. She explained that she had had breast cancer some 20 years ago, and is completely healthy. She looked great: in her 60s, she was fit and beautiful with a long mane of healthy hair. (I notice hair a lot more these days.)

She then asked, again, very tentatively, if I would like her to pray for me. “I’m on the prayer team at my church,” she explained. I accepted her kind offer. Although I’m not the least bit religious, I will happily receive the love and good thoughts of any person who wishes to share them, via whatever process they choose.

Here came the weird part. She said, “Ok, then come on in to my fitting room.”

https://giphy.com/embed/glwlvYIRPivXW

via GIPHY

She didn’t seem like someone who would try to stab me with a pen knife, so I obliged. Don’t get me wrong, this felt exceedingly odd. But…she seemed completely sincere and strange things can happen when you tell people you have cancer.

She mostly closed the stall door, leaving it open just a crack, and then explained, about a foot away from me in this tiny fluorescent lit space, that many people had prayed for her when she had cancer, and she believes it made all the difference for her. She was never sick during treatment, she didn’t lose her hair, and she’s been healthy for more than twenty years. She was convinced that prayer saved her, and she wanted to extend the favor. She said, “I don’t know if you’re religious,” as part of her explanation, to which I responded, “No, I’m not. Not in the least.” Still, she kept going, but in a very respectful way.

She was halting in her approach, presumably because this was an awkward encounter and she was trying to make it as comfortable as possible. She put her hands on my shoulders, bowed her head, and began to pray. It went something like this:

“Lord, please watch over this woman.” She paused. “Protect her…our sister…” and then she looked up at me and asked, “what’s your name?”

“Sunshine,” I answered. She smiled, quickly, and then bowed her head again.

“…our sister, Sunshine, and keep her well…and let her get through this treatment without pain or sickness…”

She went on in this way, but to be honest, I didn’t hear much of it. I was completely overwhelmed by the pure intensity of what this stranger was offering me.

She continued, “…in Jesus’ name. Amen.”

As she finished, I was sobbing. She didn’t seem to have a tear in her eye. She smiled and wished me the best. I thanked her, still in a haze, wiping my eyes, and left the fitting room.

I didn’t “feel the hand of God” in this interaction or anything like that. I didn’t experience any tingly feelings or a wave of warmth. What I felt was the love of a fellow human who chose to share a random act of kindness with me. THAT is my religion.

And that is the kind of crazy thing that (mostly) balances out the bad days.

Image result for wish you were here beach

Poopy Hell Days and Random Acts of Kindness

Most Importantly…

I completed week 11 of chemo this week!

Image result for i feel good

Other than chemo brain, hair loss (which you’ve already heard about ad nauseum from me), continued GI issues, taste changes and the beginnings of neuropathy, I’m doing pretty darn well.

I’ve finally accepted that if I eat a very mild diet I can hold off diarrhea most of the time. This means a lot of potatoes, pasta, rice, bananas, and my favorite of late, English muffins. I’m not sticking to a strict BRAT diet, but the mild stuff definitely makes my body happier. When that doesn’t work, there’s always Immodium.

The neuropathy is a relatively new thing. Thankfully, this is very mild at the moment. I started to feel some numbness in my finger tips and toes about a week ago, and Nurse M told me this is a very normal way for neuropathy to start. My nail beds have been intermittently sore for a couple weeks, which is also par for the course. This hasn’t had much of an effect on me yet, other than having to use a utensil, rather than my fingers, to pop the tops of soda cans. I keep my nails very short, which mostly prevents any unintended snags (such as what happens when pulling up a blanket to make the bed) that aggravate the finger/fingernail pain.

Long story short: I’m doing remarkably well for someone who’s had 11 weeks of Taxol. Only four weeks to go!

Thanks for all the love and support, all. I feel it.

 

Most Importantly…

TCBY

Maybe that title made you think of the frozen yogurt company, with their catchy little four-note jingle.

That’s the tune I’m singing for something far less fun than frozen yogurt: PCCI.

Say it with me: Post-chemotherapy cognitive impairment.

AKA, Chemotherapy-associated cognitive impairment (CACI), Chemotherapy-related cognitive impairment (CRCI), AKA chemobrain.

I can’t summarize this any better than Dana Farber’s page on the issue (perhaps because I’m having problems finding words):

Symptoms may include decreased short-term memory, problems finding words, short attention span, and difficulty concentrating and multitasking.

I have EVERY SINGLE ONE of those symptoms. My difficulty concentrating also manifests as a discomfort with crowds–not just major crowds, but even party-sized crowds. It takes great effort to have a conversation right now, and if there are more than a couple people in the conversation, I’m so easily distracted that it becomes uncomfortable and even a little anxiety-producing.

On the up side, I have a really great excuse for being a total flake.

But the whole experience is pretty maddening. I can barely remember conversations that I’ve had hours (and let’s face it, sometimes minutes) afterward. I often find myself saying to people, “I just read, or maybe heard, or had a conversation with someone recently where they said xxx, but I just can’t remember where I heard/read this thing.” And sometimes I’m not even sure if I actually heard/read/had the conversation or if I just imagined it.

The International Cognition and Cancer Task Force reported that “neuropsychological studies have shown cognitive dysfunction in 13-70%” of chemotherapy patients. This wide range, according to the Task Force, is a function of different definitions of cognitive impairment and highly varied approaches toward evaluating the effects.

(Not for nothin’, but perhaps they want to start by finding one single clinical term for this so we’re not stuck with PCCI, CACI, CRCI, and however many other ways people have found to describe chemobrain in the medical literature…)

Interestingly (you know, interesting in one of those completely fucking annoying ways), women may be more susceptible to chemobrain than men, and some types of chemo seem to cause chemobrain more than others. Guess what? Taxol is one of the chemobrain culprits. Yay.

Studies of breast cancer patients have shown that those who reported cognitive impairment actually had changes in the resting states of their brain activity on MRI scans. Generally, these researchers think the brain’s network, the huge collection of neural synergies that characterize normal brain activity, becomes disorganized by chemo, reducing the efficiency of information transfer.

That’s all well and good, but the reality is that chemobrain is very poorly understood in terms of its near and long-term effects. Some people continue to feel these effects up to a year after treatment and 10-20% of patients experience them for many years.

I am desperately hoping that my biological freakishness doesn’t extend to this particular domain.

So, if you haven’t seen me for a while, or if I decline your party invitation, keep this in mind. And please remind me that I already told you this if I start explaining it again. 🙂

TCBY

The Complex, Precarious Line…

…between fine and horrible.

 

Image result for precarious balance
Image: Amjad Rasmi

This great summation of living with cancer came from a recent visit with my survivorship clinic therapist, Dr. B.

 

Hard stop.

Let’s take a moment to think about what a survivorship clinic is. Obviously, this is a way to help cancer survivors and their families deal with the many physical and emotional outcomes of cancer treatment. But, increasingly, as more people (like me) become chronic cancer patients rather than dealing with a single acute case, the issue of survivorship has become a challenging problem. And it’s a problem that requires viewing from many perspectives.

In 2012, the American Cancer Society estimated there would be 18 million Americans with a history of cancer by 2022. I’m sure that number has increased significantly over the past 5 years.

Let’s start with the patient’s perspective. As someone who has been categorized as a survivor for the past 5 years or so, I can tell you (and I have) that the perspective shifts mightily when you must confront cancer as a chronic condition. Look, any person who’s ever had cancer or lived with someone with cancer will tell you that the fear of recurrence is omnipresent, even though it may recede to the cobwebby portions of your brain for periods of time. There’s even an abbreviation for this in the literature: FoR. But it’s not just the fear of recurrence. There is also the hard reality  of facing ongoing cancer care, in one form or another, for the rest of your natural born life. Together, these fears and reality checks make the world look a little different.

Image result for beautiful old woman with long silver hair
You know, like her. Maybe without the statement necklace.

Now a darker shadow looms over the question of whether it might be possible to ever have a family. You find yourself wondering if you’ll be able to see your nieces and nephews (biological and otherwise) graduate from college or get married or save the world. You worry about how this might affect your ability to travel or consume alcohol or just live your normal life. Whatever that was. You even wonder if you’ll be able to reach that end point you’ve long imagined: “when I’m an old woman I shall have long silver hair that cascades beautifully and in a not-unruly manner over my surprisingly attractive old lady shoulders.”

And then there is the patient’s spouse, caregiver, and/or family. These are the people who help the patient deal with the day to day realities of “surviving.” And who, in turn, have much surviving to do themselves. Surviving the constant trips to treatment or the hospital or to pick up medical supplies. Surviving their own versions of the omnipresent fears. Surviving their own worries or guilt about what prompted that cancer in the first place. Figuring out how to live a life that is rich and satisfying while managing physical and emotional baggage that can totally change relationships, for better and worse.

The doctors, meanwhile, are mostly trained to treat a specific physiological problem. But chronic cancer, like other chronic diseases, engages more than just a specific affected organ. It affects your mind, in the ways described above and countless others. State of the art cancer care is highly integrative in its approach for this very reason. But the medical system is still in the early stages of figuring out how best to care for chronic cancer patients. Treatment advances mean that some cancer patients (mostly those “lucky” enough to have common types of cancer like breast and prostate) can live for decades, occasionally having to “intensify” their treatment as Dr. M told me, but then enjoying long periods of “deintensified” treatment.

I’ve been surprised by how many oncologists have said to me, “well, we hope there might be a breakthrough/cure in the future that will end this as a chronic condition.” Assuming this optimism is based on their medical knowledge and not just blind faith, it’s great to hear their hopeful words. This is still a fairly new optimism, though.

And then, finally, there is the perspective of the broader medical establishment. As treatments improve, this means more people will live with cancer, be in remission from cancer, or even be cured of cancer (but still suffer its aftermath) for decades. This poses a huge range of questions and potential challenges for an already overburdened healthcare system.

The Centers for Disease Control even developed a National Action Plan for cancer survivorship in an effort to frame it as a national public health priority. They identified “four core public health domains: surveillance and applied research; communication, education, and training; programs, policies, and infrastructure; and access to quality care and services.”

Aging cancer survivors not only have the emotional and physical baggage of their treatment(s) to deal with, they also will develop all the normal pains and problems that come with age: hypertension, cardiovascular disease, etc. And the icing on this not-so-delicious cake is that cancer survivors may even develop additional primary cancers from their exposure to radiation or chemotherapy. (See this paper for many references on these previous points.)

Note that I have not included the insurance perspective in this. Given the outrageous shenanigans going on in the US House and Senate right now related to health insurance, I don’t really have the patience to dive into this variable of the survivorship equation sufficiently.

I will say this: any approach to health insurance that doesn’t cover pre-existing conditions, chemotherapy drugs, mental health, lab services (we cancer patients get a lot of blood tests), or that slashes Medicaid or places lifetime limits on coverage, is a non-starter for your average cancer survivor. In fact, it might be more accurate to say that the absence of those types of coverage (all of which have been under consideration at one point in the House and/or Senate bills) is a death sentence for cancer patients and survivors.

So, survivorship is, indeed, a complex and precarious line between fine and horrible.

 

The Complex, Precarious Line…